As of 2018, 58% of caregivers are between the ages of 25 and 54. If you’re a millennial like me, born between 1981 and 1996, that statistic may scare you, especially if you’ve never considered having to care for a parent or older loved one in the near future. If you’ve already become a caregiver, perhaps you’ve felt lost and inadequate, trying to understand health terms, juggle work and doctor’s appointments, and spending nights and weekends making it possible for your loved one to stay in their home and live independently for as long as possible.
Statistics show that most millennials will eventually become caregivers to our older loved ones and in the process, will most likely struggle with social isolation and role reversal, just like our loved ones will. We will face tough questions and conversations, painful realizations, and navigating an increasingly complex healthcare system.
My husband and I grappled with this when my strong-willed, quick-witted mother-in-law who used words like ‘apropos’, was diagnosed with terminal, metastatic cancer. She wanted to live out her final days at home – completing the daily crossword in the paper, welcoming visitors, and spending time with her beloved dog. It became increasingly difficult for her to do so and, though on the outside it seemed like we were “handling it,” we were constantly second-guessing ourselves and wondering, “What do I do if she doesn’t want my help?” If you've been here too, or when you eventually take on this role, know that you are not alone in this struggle. Here are a few things we learned and tried to remember.
1) Do everything they’ll let you do – even when you know it probably isn’t enough. As family members, you’re likely filling a caregiver role before professional assistance like hospice care begins. While being respectful, try to lightly push boundaries and tune into the phrases they use that may indicate a fear of imposition more than a true lack of need. “You don’t need to do that” and “that’s not necessary” are common reactions that really mean “I’d really appreciate if you did, but feel like a burden.”
2) Meet their basic needs, set reminders, and delegate. Look for services available in the community and through companies to augment what you can do. Programs like Meals on Wheels and grocery delivery apps can help provide nutritious food when you’re unable to shop or cook for them. If they have a dog or cat, hire a dog walker, who, if you pay a bit extra, will also clean the litter box or feed the pets. Use Amazon, Target, and other stores with delivery options to buy Ensure, mobility aids, and pet food-- and perhaps throw in a little surprise to bring a smile to their face. If you need help finding free and low-cost options, start by calling 211 for help.
3) Plug into managed care support, but recognize that there will be gaps. Care advocates, treatment navigation specialists, and other support provided by the hospital only go as far as your loved one is willing to take advantage and as much as they are accessible. Use a notetaking app or add “events” to your calendar to track referrals, medication, and visit notes so you aren’t relying on memory or hospital records.
4) Long-term and end of life planning are important and hard—try to embed this discussion into ongoing conversation. While I am a firm believer that talking about long-term and end of life plans should be done while healthy – it is a hard conversation to have, especially between parents and children. Medical directive templates are available via your hospital or online, and there are free and low-cost services that will help create wills. You can lean on the nurses and doctors to open the door to this discussion, but gently push back when your loved one waives you off by saying “you will know what to do.”
5) Take care of yourself. After a long day at work, shuttling your loved one to radiology or chemotherapy, and taking care of your family, it can feel impossible to reach out to friends and easier to isolate. It is a lot to reconcile – taking care of someone who for over half your life took care of you. But remember the oxygen mask instructions every time you fly, and make time for the things that make you laugh, feel connected, and relax.
Every caregiving experience is unique, but know that you are not alone. The moment your love one forgets to charge their phone and you are incessantly calling – terrified. You’re not alone. When you’re the only one in your immediate circle who has lost a parent at a young age, you are not alone. And when it seems like too much, pause to cherish the small moments and talks – even if they are apropos of nothing.
#Team211 #211 #Millennial #caregiver #cancer